Endometriosis Adenmyosis or both?

Hi,

I just wanted to make you all aware that often clinicians fail to check for the condition called adenomyosis. It is where pieces of endo like tissue grows within the walls of the uterus produced by estrogen, that in turn create even MORE estrogen and then bleed constantly within the walls of the womb. This leads to an incredibly swollen tummy, irratic and very heavy periods and clots, anemia, hormones that are all over the place, ultimately miscarriage and the inability to walk or even work.

Please feel free to visit the website to learn more adenomyosisadviceassociatio... to learn more, find out how to get screened and spread the word amongst your female family members, colleagues and friends. Please be aware this condition exists and often is undiagnosed in women with endometriosis and other gynae conditions, and the patient only usually finds out after hysterectomy.

The website offers information and support and gives a list of the symptoms and treatments currently available - globally, and we are working hard to discover more about the condition x

Danielle Wright, Founder ~ Adenomyosis Advice Association

5 Replies

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  • Thank you for bringing this to my attention. I will be mentioning this condition at my next gynae appointment.

  • Thank you for bringing this up. It is true it is often misdiagnosed or not diagnosed, I had this for sometime and only upon endo surgery for fibroid removal the surgeon found it and removed it, it was a large growth and my tummy had been very big, my womb being 10 weeks of pregnancy size, and yes I was in horrible pain., especially before and during my period, my tummy would swell so much, wow, it was gigantic I would look perhaps 20 weeks pregnant, completely distended and tender.

    I sometimes wonder will this reoccur as all other women's problems can. I hope not, but it any swollen tummy comes back and they tell me there is no fibroid, I will be asking them to check for this.

  • Thank-you Danielle, I have been diagnosed with this condition after a laparoscopic operation. The Dr said it was extensive and that he struggled to treat a lot but he did manage to mobilise my ovaries and tubes. Since my operation I have felt okay for the first 8 weeks but recently I have been in immense pain, cannot eat, have lost a stone in weight and generally feel so poorly I have had to go on sick leave again. I think that I may loose my job due to my sickness being so appalling the past 18 months, do you know of any benefits that I would be entitled to if I come out of work please. I have worked all my life since leaving school and have worked really hard to become a teacher but I just do not have the energy or enthusiasm anymore especially when your in constant pain. I also take Tramadol which are great for the pain but they make me feel quite tired and I lack concentration whilst taking them. I have an appointment to see the Dr who treated me and I was thinking of asking for a hysterectomy, do you think that this would be the best treatment to opt for or would you opt for other treatments first?

    Thank-you so much for your time reading this if you get time I would appreciate some feedback, thank-you.

    Melanie

  • Hi Melanie, I have to say hysterectomy if your case is severe will be the only sensible option. The sticking plaster approach does not work and leaves the condition to grave in terms of progression and outcome. I understand about the work issue. The department of work and pensions will be the best place to check regarding benefits if you are based in the UK. In the US adenomyosis comes under the list for disability so women are able to get support. Here in the UK endometriosis as far as I understand it used to appear on a list that you could claim for, however with the recent changes, this may have altered. Please feel free to check via this link gov.uk/incapacity-benefit Please feel free to contact me via the Facebook page of the Adenomyosis Advice Association (it is secure and confidential) Kind regards, Danielle x

  • Thank-you very much Danielle, I may take you up on the FB contact which is very kind of you. I live in the UK so I will have a look at the link you have recommended, thank-you. It's terrible to have to look into benefits but I just don't think there is any other way at the moment, but I a, keeping positive, onwards and upwards as they say, thanks once again.

    Melanie

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